I hesitate to post this because we are still not certain what the outcome will be. But I figured I might as well take you guys along for the roller coaster ride so you can hear everything that we hear.
We got the results of the CT scan, and it doesn't sound very good. There is a good size abscess underneath the sternal wall. Dr. Hanley (surgeon) and Dr. Lewis (immunologist & infectious disease) still need to review the scan themselves, but after getting the report from radiology it sounds like there are a couple of options.
One might be to go back to the OR to drain the abscess. I can not even fathom this possibility right now. That means another open heart surgery, another intubation, more chest tubes, etc. Basically starting over from square one. If this is the case I will request that Dr. Hanley is the only person whose hands are inside my child, since I'd like to minimize the possibility of anymore raging infections.
Another possibility would be some serious antibiotics for 4-6 weeks. I don't think I can stay in this room for another 4-6 weeks. I will go crazy. They will wish I was gone.
Of course, there is also the possibility that they will review the CT and come up with some different course of action. Who knows? That is the fun of being in the hospital.
So please pray for wisdom for the team of doctors that will be making these decisions. Please pray that we will be able to stand firm and endure whatever the future holds for us. And pray that our faith remains strong. I will update again tonight when hopefully we will have more information.
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38 comments:
Wait for Hanley's review and what he suggests as interventions. If it is a "localized" cyst, that could be the good news in this case.
Obviously it HAS to be dealt with.
Many, many DEEP breaths.
Wait for Hanley and ask him everything! Write down questions if you need to.
Prayers. Prayers.
carl
you'll all be in my prayers. i can't even imagine what you're going through right now.
That is NOT great news.. Trust that Dr Hanley will do what's right for Drew. Your family is in my prayers, Andrea.
Love,
Joan
oh my goodness....i am so sorry that it is looking like it is not good news. Just remember what we were talking about last night. It is good that they did the scan and found this, so that when you come home, you will never have to go back. Ever! Even if Ava feels like you guys are living at the hospital now! Again, again, again!! She is so cute! I love you guys and are praying for strength and endurance for all of you.
Praying HARD! Miracles can happen, so I will pray that one happens now and that the abscess disappears.
Sending you love and peace and many prayers! oxox
We will be praying and waiting for Dr. Hanley's review. I am so sorry that you guys are having to go through all of this, but it will all be worth it. Take care of yourselves and keep strong and faithful for Drew. If you need anything please let me know.
Take Care,
Rebecca
Andrea I am so sorry! I am praying and wish there was something more I can do! I love you guys!
Dee
I will be praying many prayers for you guys. I know that God will give the doctor(s) wisdom to do the absolute best course of action for Drew. The unfortunate thing is it may not be the easiest for any of you. God bless you all! May he give you strength for your own health to remain good (no low immune systems), and strength to be everything that Drew needs you to be so he can get better. Please please use your support system (you can put me on that list!). We are here for you, whether you just need to cry, scream, curse, or laugh because you simply don't know what else to do! We're here for you.
Lots of love,
Taria
P.S. I'd be happy to email you my number. I know you don't know me, but maybe that would make it easier to be the person you call when you need to rip someone's head off! :)
I know I tend to put alot in between the lines on my posts. Unable to predict any results or see scans, I offer the following to hopefully put you at ease until you can talk directly to Dr. H./others.
A localized cyst or pocket can be relatively easily drained. But it must be dealt with and monitered until resolved. Just by calling it a cyst, they tend to indicate it is walled off. That "good" in a sense because you definitely don't want to wish it any further into his repair. I highly doubt that since it would not result in even a mildly stable child.
Love to you both, c
I can't imagine how frustrating this news is for you- I'm overwhelmed by it and I haven't been sitting at my child's bedside for a month. We continue to pray- and we love you guys tremendously. We'll be anxious to hear how Dr. Hanley feels about it when you report back tonight. Sending you a big hug!
Crap. Seriously,and literally, crap! I really don't know what else to say. But I do know that you CAN do this, you already are and have been doing a wonderful job for the past twenty-too-many-days. If you are required to stay much longer, you might need to take a "road trip" and give yourself a longer break than just going out to dinner, getting a pedicure, etc.
I am so sorry! I don't have anything inspiring to say right now... I'm sorry.
You are doing a wonderful job!
We're praying and praying...
-Jennifer
Oh man. UGH. I've been sending all sorts of positive thoughts and prayer and love and hope - everything I've got your way.
Time to send some more. Can I have an address? Sammy has something he wants to send Drew, and I have a feeling mama could use a little love too. I can't imagine what all this - such a long stay and now this - is doing to you.
*hug*
I found your blog from Angel Kate's blog. Our family has no connection to kids with heart, but we have been praying for several weeks for your family. My almost 5 year old said "Maybe we could ask Drew and Ava over for a playdate when he is feeling better" - I think that shows she thinks of him as a friend. Too bad we live all the way in St Louis! She would really like to send a card to Drew, but I understand if you don't want to let a stanger know exactly how to find your family. We will continue to intercede on behalf of your special family. Keep up the good fight!
Dear Lord... I pray for wisdom for Drew's medical team. I pray healing for Drew's body. I pray for hope and perseverance for Andrea and Dan and Ava. We know that You have perfect timing God... but it really seems like the Himmels have been there a lloooonnnnngggg time. Help the Himmels find some hope in this period of waiting, God. Continue to give them strength. Amen.
I just got off the phone with Dr. Mainwaring.
Call me when you can.
Hi Andrea,
I'm not quite sure how I found your blog but have been visiting since about day 14. ;-) I'm a heart mom in Oakland and my daughter Summer receives her care at Children's Hospital Oakland. Her primary surgeon is Dr. Olaf Reinhartz and Dr. Hanley assisted with 2 of my daughter's surgeries.
I just wanted to let you know I FEEL for you sistah! This totally sucks. Since we're neighbors and all, If there's anything we can do (bring you a picnic dinner or gift goodies for Ava and Drew) just let me know.
Also, my husband is in surgical sales and repairs. There is a device that some surgeons use to deliver antibiotics and antiseptic (something numbing) right into the incision. They leave it in during the first few days after the surgery. It decreases the chance of infection. Not all surgeons like to use it and he's not sure if there's a pediatric version of the device or if it's one size fits all. We were going to ask about it for Summer's upcoming Fontan - they did not use it for her Glenn or BT shunt. Anyway, in the event that Dr. Hanley has to open Drew up again, than maybe he can comment on the antibiotic incision device.
Oooo, another benefit of the device is that patients end up requesting less pain meds because of the topical pain numbing formula that is delivered to the incision site.
Feel free to send me an email if you need anything and know that Drew has some cheerleaders in Oakland. Hang in there. You guys can see it through. I know you can.
Anna
anna_m_johnson (at) yahoo (dot) com
ps. we're on carepages - search for summertimes
Andrea,
I know this is terrible news, but at least they found the abscess and it CAN be treated. Praise the Lord for that! The Lord never promises us things will be easy, but he does promise he'll be with us along the way. Stay strong! The peace of the Lord is ALWAYS with you!
First of all....that is wonderful news about the immunology studies. Did you find out for sure if that was the right number? What a miracle if it is!!!
I'm so sorry your having to go through all of this. I don't understand why they would have to do another open-heart surgery for the abcess. I hope and pray that is not the direction Drew is headed. Look at all the miracles God has already done...let's keep praying for another!
I heard you got to met with Kathy & Isaac! How exciting to meet a blogging buddy. Hope you have a better day. I'm praying the next post will be full of good news.
Hate is a strong word, but I HATE this news. I can't imagine how you guys are feeling today. I know I'm a broken record, but you guys are doing your best for your family and that is all that is required.
Any chance they can hook you and Dan up to an IV pina colada drip for the duration of this hospital stay? It couldn't hurt to ask.
I found your blog through Erika (wonderbliss) and just want to send our thoughts and prayers and healthy vibes to your little one. We will continue to pray for all of you.
Thank you for the update and your transparency in all of this. We will continue to pray for healing and endurance for this race. We know you'll win and our Father can carry you to the finish! Hang in there!
With much prayer,
Marisa and Mitch
Hi Andrea, Dan, Drew and Ava,
I'm so sorry for everything you're going through. I know that you have a million people rooting for you, and praying for you, but if you need anything, I am here. We definately know how this feels, and it is so scary to think that he may have to go back to the OR. :( I am praying for you, and so is everyone we know. Please let me know if I can be of any help to you at all!
Sending positive prayers and thoughts,
The Stone Family.
I think I feel like Anne Marie does...
I'm totally in tears just reading this, and I'm not living it.
All the feelings that I'm feeling are probably just a fraction of all that you are going through.
I'm doubling up my prayer efforts for you.
Tripling.
Love you!
I hope some good news is on the horizon.
We continue to send good thoughts your way.
Dina
Ugh. You're supposed to be going forward, not backwards. I know that is not the news you were hoping for, but hopefully they've at least identified the problem and can now set Drew on a path that corrects this problem. Keeping our fingers crossed. Neither choice sounds like a good one or a quick resolution. Hugs to all of you.
xxoo
Suzanne
We have been checking in everyday...I was so sorry to hear the news about the abscess. We are sending lots of positive thoughts and love your way and hoping for a non-invasive and rapid solution for all of you. Best wishes.
ugh. How frustrating. I'm so sorry, but glad you have a great team of doctors keeping track of every little detail (even if you do a better job of it :-)) We'll keep praying for patience and endurance.
Jen (& Todd)
Ditto what Kate said.
AL
Dear Andrea and Dan,
This is Meredith's Mom. We will continue to pray for all of you. We will pray for wisdom for your surgical team and pray that God will hold you all in His Hands and give you all strength. I will light a candle for you all.
Blessings from Texas.
Barry and Cindy Hampson
Mer's Mom-In-Law here..Will step up the prayers for Drew and your family. Keeping good thoughts for all of you.
No way!!! I'm not believing it. I feel like getting on the floor for you and throwing a tantrum. I can't hold back the tears right now. It hurts me and makes me so sad to see you all go through all of this.
I just prayed with Eben and told him why I was sad. He said a prayer for Drew that went something like this," Jesus, please fix Drew, make him better and not be lonely."
Leave it to Pete to remind me that we do have something to be thankful for, as I'm crying. Be thankful that there are doctors to fix Drew. And that is exactly what they will do, this process is just angonizing and long to say the least!
I'm so glad we are coming to visit tomorrow. You will need a hug (heck, who am I kidding I need a hug too)and plenty of shoulder rubs.
I will be wrestling with God tonight for sure. I pray that he will work one of those miracles we hear about and heal Drew without a longer stay or surgery!!!
Love,
Jen
I know that you don't know me, but my son Logan was in the other Pre-k3 class last year. He saw Drew's picture and said "I know him! That's Drew!" I just wanted you to know that people everywhere are praying for you and your family. I have been since the first e-mail, I just for some reason today felt called to let you know there are a lot of us out there that you might not even know. Take some comfort in that and we will be continuing to pray for you every night in our prayers.
-Tiffiny Falcone
(Logan's mom)
HI Dan and Andrea,
Sounds like that puss pocket has to go. Sure wish there was an easy way. He looks good in your photos and I am sure it's because he has such great parents that continually make this whole experience more like an adventure for him. Love those Stanford dogs. Sasha could do that! We love you and we keep you in our constant prayers. Hugs and kisses... Aunt Joanne and Uncle Rog
Andrea and Dan:
I can just imagine the resounding prayers reverberating through heaven as so many lovely, lovely people lift up your family. It's so heavenly, dear friends.
I, too, am praying for a miracle -- that the abscess will dissolve and that it will be a huge testimony to God.
I hope the many many entries of encouragement are doing just THAT...encouraging you. It's so amazing to see the number of people who've "stumbled" onto your blog, and who are lifting you guys up.
Blessings and prayers -- come home!
Love, Lori 8 )
They seriously need a kickboxing/taebo class at the hospital so you guys can get some of this frustration out. This is going on so long.. Just a true test of sanity Im sure...Im sorry.
God will prevail though, believe in that, keep trusting, keep believing.. Drew is in his hands..
Love to you guys,
Liz
Does telling you that I love you even help anymore? Seriously, I would switch places with Drew myself just to make this whole ordeal be over. I wish there was something I could say or do to make this be easier on all of you. I will keep all of you in my thoughts and prayers and HOPE for a speedy (er) recovery. XO
Andrea,
I didn't even ask you today about the CT scan...and now I'm reading about it....GEEZ!
Can't wait to see what the "PLAN" is!
How awesome that you asked for an immunology consult, and SHE asked for the CT scan...amazing...
You will all be in our prayers. Joe flies in tomorrow morning and I'll bring him over to meet you and Dan. PLEASE let us know if there's anything that we can do to help make this process easier for you.
Thanks for your friendship and we're here for you if you need anything!
Lots of love,
Kathy
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